A Unique Perspective

Getting to Know Billi Ewing & Her Experience at the 2018 National Patient & Family Conference

What type of brain tumor were you diagnosed with and when?

I was diagnosed with a benign atypical meningioma, grade 2, on August 28, 2014 and my surgery was on September 9, 2014.

How has your life changed as a result of a brain tumor diagnosis?

You would never know by just looking at me that I was a brain tumor survivor. I am blessed and recognize that I have had a very positive post-craniotomy healing experience, but I do have a new normal that, 4 years later, I am still trying to get used to.  Fatigue, eye pain, sensitivity and reduced vision in my right eye; reduced hearing and tinnitus in my right ear; facial pain and sensitivity at my surgery site; reduced range of motion of my right jaw and more make the simplest of days exasperating and stressful at times.

Why did you want to attend the 2018 National Patient and Family Conference?

I have been running off of pure passion and desire to raise awareness about brain tumors in my community and beyond since I had my surgery, but my medical acumen really didn’t extend past my own personal experience.  To truly be a “one-stop source for education and inspiration”, I recognized that I need to continually increase my knowledge about them.  Attending the American Brain Tumor Association’s 2018 National Patient and Family Conference was my first step in that direction.

Please describe the overall experience you had at the Conference? 

It was a wonderful, unforgettable, life-changing experience for me.  The stories of other survivors, their caregivers and loved ones, ABTA staff and those representing all aspects of the medical field and brain tumor awareness community informed and inspired me on so many levels. I experienced a bevy of emotions – amazement, sadness, laughter, hope, gratefulness – in just 2 short days.

Which part of the conference program was most impactful for you and why? 

I learned the most in the “Understanding Your Tumor: Tumors of the Brain Lining and Nervous System” breakout session, but the networking lunch and exhibit visits on Saturday had the most impact on me.  Breaking bread and having a brief moment to commune with one another was just what the doctor ordered.  I don’t have a robust brain tumor survivor circle in my hometown and it simply felt good to be in each other’s presence, getting to know one another on a more personable level, making new friends and allies in this fight for a cure. 

Please tell us about any new friends or connections you made at the Conference.

I had the honor and the pleasure of getting more acquainted with the Thurbers, this year’s Joel A. Gringas Jr. Award recipients; fellow Daytonians, the Mathiles.  I was happy to know I was able to impart a little bit of knowledge to CBTRUS representative Carol Krucho when I shared how helpful it would be to be able to locate and extract data by race so it could specifically be shared in our respective communities as we try to raise awareness culturally.

Do you plan on returning to ABTA’s Patient and Family Conference next year?

Yes, I do!  And hopefully, I will be bringing some other survivors with me so they can experience it too!

 

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